Chronic kidney disease (CKD) support: Introduce yourself and connect

Hi, I have had ckd for many years and it's currently at stage 3B. I've learned many things over the years. The best one I can say is that we must stand up for ourselves in regard to medical issues. Many health professionals tend to brush ckd patients to the background unless they are in stages of late 4 and 5. I've seen several doctors that just tell me to stay hydrated and take my meds to keep the high blood pressure, diabetes and anemia in check. However there is more to do and eating the right foods while avoiding the wrong ones is a huge part in how we feel daily and to delay (hopefully forever) going into dialysis. I've also learned never to blame myself or anyone for the diagnosis of ckd. It's the deal we've been handed in life to handle. Let's do it to our best ability. Research, ask questions, trust but verify information and every day is a gift to be lived and learn as much as possible. Let's journey together through it on here and thank you for creating this group.

@biowicks
I am 3b and have neuropathy pain from shingles and the only pain meds I can take are opiods but my pain is horrible. Trying to see a nephrologist now but cannot get a referral

I am a 74-yr old lady, been on dialysis for 5 yrs now and I had an issue with being on dialysis, but I have 6 grandchildren and 1 great grand. I want to live so dialysis 3 times a week is good with me. Traveling out of the country is my issue but I resole to traveling in the states until I get my kidney.

@aishacory Welcome to Mayo Clinic Connect! I love that you are not letting your dialysis stand in the way of traveling. Just so you know, I have a friend who is also on in-center dialysis. He has done extensive traveling in the US , and even gone to Spain and other places in Europe while on dialysis!
Ginger

@roz1955
Keep active, try or get help to do strengthening exercises safely. We have to stay strong for not only daily activity, but those extra things we would like to do. Do your best.

I was just diagnosed with CKD stage 3 this week and am a total loss. I work at a hospital and am able to see my results. It is from my blood pressure which is totally out of control now. I was in the ER this week when it started and I have constant headaches everyday. I have been on losartan and amlodopine for about 10 years. I have been reading a lot on the web but some sites contradicts others and it’s just overwhelming. My next appointment isn’t until this coming Friday with my PCP. But these headaches are getting the better of me. I am unsure what I can and cannot eat due to all the contradictions. Does anyone have any advice on the headaches and eating? Thank you.

Jen, @jennifern welcome to Mayo Clinic Connect. High blood pressure and diabetes are the two most common causes of kidney troubles. It is good that you are seeing your PCP soon. Maybe your blood pressure meds are due for some fine tuning. You could also ask for a referral to a dietician. Someone who knows renal nutrition could be helpful to you. Most of us with CKD avoid sodium. It can raise blood pressure. Many of us limit protein especially red meat because it is hard on kidneys. Learn about kidney function labs such as eGFR, creatinine, BUN, blood and urine protein. There are others like calcium, phosphorus, potassium and oxalates are good to find out about too. If you have trouble with any of these a renal nutritionist can give you food lists of high and low quantities of these substances to be mindful of. A new diagnosis like this can be stressful and may have something to do with your headaches. CKD itself doesn’t usually have noticeable physical symptoms. Mention the headaches to your PCP. Get your questions answered. Knowledge is power. I’ve had CKD since 2005. You can live long and well with it. You are not alone.

@gingerw

How long can most people live a quality life style while on dialysis?

Ron

@ronaldjbaer You ask a very good question, one that I find difficult to respond to!

Dialysis is a treatment, not a cure, for CKD. That said, many of us have additional health concerns going on, in addition to our kidney issues. So, there is that to consider and sleeve into our daily lives. Getting a handle on everything together is indeed a balancing act, sometimes on a daily basis! It requires rigorous scrutiny and evaluation.

Quality of life is very subjective, in my humble opinion. Activities and things we used to do may need to be modified, revamped, or put to the side. We learn a lot about ourselves, and what/where we find meaning. I have known people who were on dialysis for 5+ years, or decades, who learned to live their lives in a new way.

As for myself, I cannot be transplanted, so I am on "dialysis for life". At this point, it has been over 4 years, of peritoneal dialysis. Quality of life over quantity of life is my motto, now. Quality of life entails not just physical, but emotional and mental well-being. This may not be the pat answer you are looking for, Ron, but I am interested in your thoughts on this.
Ginger

The question of quality of life is of course very subjective as it should be. Each of us is the only one in the universe so I think we obviously have to determine this for ourselves. What is often missing is permission to be ourselves both from ourselves and from other people. It usually takes great courage to determine and live out one’s quality of life.